自闭症和非自闭症成年人的医疗保健体验比较：一项由学术-社区合作促成的横断面在线调查。
Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership.
机构信息
Department of Medicine, Oregon Health & Science University, Portland, OR 97239, USA.
出版信息
J Gen Intern Med. 2013 Jun;28(6):761-9. doi: 10.1007/s11606-012-2262-7. Epub 2012 Nov 21.
BACKGROUND
Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.
OBJECTIVE
To compare the healthcare experiences of autistic and non-autistic adults via an online survey.
METHODS
We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants.
RESULTS
Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82-0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient -1.9, CI -2.9 to -0.9), general healthcare self-efficacy (beta coefficient -11.9, CI -14.0 to -8.6), and chronic condition self-efficacy (beta coefficient -4.5, CI -7.5 to -1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1-3.4), mental health (OR 2.2, CI 1.3-3.7), and prescription medications (OR 2.8, CI 2.2-7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3-0.9) and Papanicolaou smears (OR 0.5, CI 0.2-0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8-3.8).
CONCLUSION
A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers' ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.
背景
对于自闭症谱系成人的医疗保健体验，我们知之甚少。此外，自闭症成人很少作为自闭症研究的合作伙伴参与其中。
目的
通过在线调查比较自闭症和非自闭症成人的医疗保健体验。
方法
我们采用基于社区的参与式研究 (CBPR) 方法，调整调查工具，使其易于自闭症成人使用，并进行了一项在线横断面调查。我们评估了适应量表的初步心理计量学数据。我们使用多元分析比较了自闭症和非自闭症参与者的医疗保健体验。
结果
共有 437 名参与者完成了调查（209 名自闭症，228 名非自闭症）。所有适应量表的内部一致性信度均良好（alpha 0.82-0.92），且具有较强的结构有效性。在多元分析中，在调整人口统计学特征、健康保险和总体健康状况后，自闭症成人报告称在医患沟通（β系数-1.9，CI-2.9 至-0.9）、一般医疗保健自我效能（β系数-11.9，CI-14.0 至-8.6）和慢性疾病自我效能（β系数-4.5，CI-7.5 至-1.6）方面的满意度较低；在与身体健康（OR 1.9，CI 1.1-3.4）、心理健康（OR 2.2，CI 1.3-3.7）和处方药物（OR 2.8，CI 2.2-7.5）相关的医疗需求未得到满足的可能性较高；破伤风疫苗（OR 0.5，CI 0.3-0.9）和巴氏涂片（OR 0.5，CI 0.2-0.9）的自我报告接种率较低；以及更多地使用急诊室（OR 2.1，CI 1.8-3.8）。
结论
基于社区的参与式研究方法可以通过提高研究人员创建易于使用的数据收集工具的能力，促进残疾人士参与研究。使用互联网的自闭症成人报告说，他们经历了重大的医疗保健差距。需要努力改善自闭症患者的医疗保健，包括那些可能被认为残疾相关需求较少的患者。
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